Autism Speaks U

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There's now a branch at my university. There are no autistic people in attendance, not even any spectrum people (all stereotypical sorority girls and fraternity boys), no autistic people in the leaders of the club, nothing. They were all joking about being autistic. Ha ha. Many of the students don't know what autism is. Many of them have never spoken to anyone on the spectrum. I know plenty... at least three or four who go to my university, and those were only the really, really obvious ones.

(I went to one club meeting. It was very, very loud)

I walk to the bus stop and there's an Autism Speaks sign there. A bus drives by and the side has another advertisement. I ride in a car on the freeway and there's a billboard. Turn on the TV... there you are. And now I turn around in lecture and there's a girl with a big circular badge three inches in diameter that has "Ask me about autism speaks" on it. But these people spread awareness of autism without spreading any awareness of people with autism.

I don't think that it's very good to have that organization at our university. It smacks of eliminationism, by which I really mean eugenics.

Advice, please. Also, if you disagree about whether or not this is a good or bad thing, please be nice. I'm a pushover and will be happy to disagree civilly.

Can you post a link to that brach?

I don't really want to blow my privacy like that, but I'd consider it if I knew what information you wanted. Why do you ask?

I don't see why it is privacy issue if we are talking about a branch of university which should be well known anyway.

I ask because it seems weird you said "autism speaks" is a branch of a university so I think I probably misunderstand what you talk about and I would understand better if I see concrete link.

Oh, now I understand. Thank you. Sorry for the paranoia.

Main site

It won't let me link directly to my university's page. I'm at UC Berkeley.

I don't mean that my university is the home base for Autism Speaks or anything like that--it's something that they're doing now, where they have little sub-fundraising branches at universities all around the country and the people there raise money to send back to them for even more autism research. These clubs are solely for fundraising, profit, and "awareness" (of the disorder), not advocacy, support, or anything else.

I know it is off topic but I was at UC Berkeley as an undergrad. Just can't help but mention.

Anyway, I will take a look at that site you gave.

The fundraising chapters are not for profit, that would be illegal, since they are raising funds for a non-profit organization. The website that you linked stated the chapters were for fundraising, awareness, and advocacy, although the individuals, in the particular group that you visited were doing a horrible job of advocating by laughing at autistic people.

Even though the fundraising group is a separate entity from the University, if they are holding the meetings in campus facilities, and are making fun of individuals with disabilities, you could certainly report that to the Campus, admin., the school receives state funding, and if something like that continues, I'm fairly sure they would put a stop to what those individuals are doing. If the school doesn't provide action, to resolve the individuals making fun of autistic people, the other recourse would be to complain to Autism Speaks about the actions of those individuals in that fundraising chapter.

Most of the people that would take the time to get involved in something like this, would have a personal stake in it, like a relative or a friend with relatives with the more disabling symptoms of Autism; I find it a bit unusual that they were making fun of people that were autistic, unless someone brought some friends with them, that were completely clueless with why they were at the meeting, which sounds likely, with how you describe your experience.

The branch wasn't listed on the Autism Speaks website, so it sounds like it must be a fairly new branch, perhaps when things get more organized, it will be a better experience for all who participate.

Eugenics isn't a goal of Autism speaks; their goal in supporting genetic research that may provide a potential prenatal test is one for potential intevention to prevent, correct, or temper the developmental disabilities that can be associated with Autism. The intent of the fundraising by Autism Speaks standards is to help people with Autism, not harm them, although some people can obviously be insensitive to the needs of people with Autism that are helping with the efforts, by your report here.

It may never be a comfortable avenue for support for you, hopefully, if you care to participate in a group for support, another group is available in the area you live in.

Last edited by aghogday on 18 Sep 2011, 1:51 pm, edited 2 times in total.

I'm still trying to figure out what Autism Speaks is up to, but it doesn't surprise me that this 'chapter' involves fundraising. As far as I can tell, Autism Speaks is primarily about fundraising. Some of its executives and core staff get paid a great deal, some external fundraising companies are paid a great deal (who benefits?), and most of the rest seems to be 'invested' in keeping the publicity machine going to get more money coming in.

I've seen several threads where similar charges are made, and some have responded by saying that as long as a bit of the money is being is being effectively spent, we shouldn't criticize the group's operations (or words to that effect).

That isn't nearly good enough for me.

It also appears to me that Autism Speaks and I are on different sides of a philosophical and moral divide - they seem to make money by scaring parents and others about autism, promising them that a 'cure' is on the way, if only they give more; I don't see autism as a disease, though I do know that many suffer debilitating effects from it.

I am in favor of research that would improve our lives but not research that whose aim (or likely use) is to avoid our birth.

With regard to the Berkeley 'chapter', many student organizations (e.g. fraternities, sororities) are encouraged to and expected to take up a cause, especially activities involved in fundraising for charities. There may not be much understanding (or need to understand) about autism in an organization supporting Autism Speaks. They have been misled into thinking they are supporting a worthy cause, when all that they are doing is supporting a self-oriented fundraising machine.

I may be wrong about Autism Speaks, but so far this is my distinct impression of what they really are about and the function that they serve for the benefit of a few.

The eugenics movement is one of my special interests. And it went very much underground after the defeat of Nazi Germany. That does not mean it does not exist. Autism Speaks doesn't publicly endorse eugenics - but modern eugenicists wouldn't. They'd be more subtle. I don't know if the people running Autism Speaks are consciously promoting eliminationism (as good a word for it as I've ever heard) - but they are certainly doing a job that would have made Goebbels proud.

I wish I had advice for you. I do not like the idea of an organisation that, in practice, helps to convince people my existence is a bad thing. I know enough history to know how that ends. If I were in your shoes, I'd be fighting them, publicly - but if you don't feel you can do that, I'm not going to criticise you for it. I only learned to fight things like that because I felt it was a matter of survival. And I know that even people who feel that way can't always bring themselves to act.

Yes, I apologize for my imprecise language. I get clumsy when I'm angry.

What I mean is that despite the fact that they are indeed fundraising, the way in which the organization at large goes about it (scare tactics) rankles me. By profit I meant that they weren't going to use the money themselves, which is really a stupid word misusage, but in any case: they are all about acquiring money, and all of it is going back to Autism Speaks.

I asked around in the group and they said they were about fundraising and awareness. The "awareness" part only means "awareness that something called autism" exists. There was certainly nothing said about advocacy or community outreach.

The people involved were probably in line with what Turing suggests, that being they are robots--whoops, sorry, they are people involved in fraternity and sorority life who just took up the nearest cause; all of them seemed to know each other as one large friend group. Some of them seem to have relatives with autism, but they don't appear at all close to the relatives; even those with autistic relatives apparently could not distinguish autistic traits and retardation. The joking mostly consisted of the "you're autistic," "yeah, well, you're a [insert derogatory name for homosexual people here]" sort of thing. I am not sure if it's anything I can do anything about.

The branch is listed under "University of California-Berkeley," which may be why you had trouble finding it. I believe this is its second semester of establishment.

I am rather worried about the neonatal testing, and also the fact that Autism Speaks generally passes over people with the disorders in order to cater to mothers and relatives. Those people are also very important, of course, but the assumption that all of us are incapable of any communication, feeling, self-care whatsoever... no, I do not think that is a good thing at all. I think that an autistic person-spearheaded initiative for a cure would feel very different than one begun by these people, and I do not think the money should go to these individuals rather than organizations like the Autism Advocacy Network.

Basically, I'm not sure how to redirect their energies. Perhaps I can convince them to switch organizations.


As far as making a public fight, there are a couple of issues. First, my mother doesn't know about my diagnosis; nor will she ever, if it is up to me. I will have to pretend to be a normal person who is very concerned about eugenics. Regrettably, I also cannot pass as normal by almost anyone's standards, except perhaps the math department's. I can't even manage to blend in with physics or engineering people--trust me, I tried =/

I, too, consider this a matter of survival, but on the other hand I have a pretty good chance of becoming a professor and I don't want to lose it due to making too much of a fuss about activism. On the other other hand, I imagine most people would understand. Therefore, despite it being only me, I am doing the best I can for now.

In any case, I am already working to contact campus administration, and will hopefully be writing an opinion piece for the school newspaper soon.

While a definitive prenatal test may not be a likely outcome, genetic research is important in providing potential inteventions that may prevent the more disabling effects of autism.

Research, just released yesterday provides evidence that 87% of regressive autism cases were associated with bowel disorders in children. The research sugests that developmental impairments associated with autism, may be influenced by the bowel disorders. A genetic association as been found through the research:




http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0024585


Research is getting closer to answers that may provide effective interventions that were not possible before. If the research like this that Autism Speaks funds results in the prevention or treatment of these bowel disorders or other factors that may be discovered, and less impairment in functioning in Autistic individuals, every minute of effort that went into the fundraising efforts that have gone into 69% of the total dollars raised for programs and services other than administrative and salary costs, will have been worth every minute for those children in the future that may have the opportunity to greater fulfill their potential.

Perhaps as a parent that had a severely disabled child with Autism, and one who was developmentally delayed in language with Autism, I see this from a different perspective than some.

I don't see a problem with criticizing Autism Speaks for the things they do that some do not agree with, however I don't think the importance of genetic research should be underestimated either, as far as the future of individuals with Autism that experience developmental disabilities. This aspect of research is not about getting rid of autistic people, it is about allowing autistic people to live a fuller life, with less impairment from developmental disabilities.

Regressive Autism is a much different scenario, from what is seen in some autistic individuals. This is the part of an Autistic child's life that only those children who experience it and the Parent's that observe it could possibly fully understand the difficulties that are experienced.

This is also the part of Autism that Autism Speaks has focused on from the beginning. Government research and research sponsored by other organizations has focused almost their entire effort there as well.

The government, Autism Speaks, and other organizations, have not focused on Autistic people without significant clinical language and cognitive delays; I see that as a worthwhile criticism, and believe motivation is needed in properly representing, portraying, and helping all people with Autism in the future.

Hmm.

In that case, I don't think it would be ethical for me to try to shut the club down, just because I'm angry at the way those individuals treat people. If the research is working to make the terrible parts less severe rather than to wipe everything out, then to me it seems a little bit like depression research in "normal" people. People get sad, and that is okay even if you have a sort of gloomy disposition, but maybe it's not so good to have the other thing going on for extended periods. I just hope the neonatal information is used for good, rather than evil. If they start doing evil things with it, then I'll try to make them stop, but not until then.

I didn't mean to say, of course, that the genetic research is a bad thing in and of itself. In combination with their rhetoric it is kind of scary, though. Well, forget kind of scary. I mean really scary. I wish they'd pay more attention to the rest of the extant autism community and how they might feel when they see all those signs and things. And, you know, not really getting to say much for this big powerful organization that's supposed to be representing us (but it's mostly not "us" in the sense that I understand it, is it?). But, unless I hear a more convincing argument from someone who knows a lot about the actual work of the organization and about the particular experiences they're trying to help, I'll be quiet about this side =)

I only have AS, but it kind of "flickers"--badly enough that a lot of people thought I was bipolar at one point, thanks to how I behave when I'm pursuing an interest vs. how I behave when I'm not interested in anything in particular. It's mostly contained in interests and really bad social skills, though, so you're right, I don't understand what you're talking about. I'm probably also pretty paranoid from being bullied for a long time--some of it just started coming up again (I mean, really, this is not supposed to happen when you are almost 21.75 years old)--so I'm making bad mental decisions right now. Thank you for teaching me, especially for being so nice about it.

I know this is off topic, but since you brought this up I want to ask you. I am in academia myself. Right now I am on a level of a physics postdoc, and I also hope to become a professor -- either in physics or in math. Now, I was assuming that this kind of stuff is based mostly on academic things, at least thats how it "felt" like when I was in USA (where I did both my undergraduate and graduate programs). But when I came to India on a postdoc level I had a rude awakening that personal traints DO matter. But even so, I was assuming that the only reason "my" personal traits matter is that people find them absolutely disgusting, as in I appear "rude" to people; but if it were something more benigh they won't care. But now that you mentioned that activism can actually keep someone from becoming a professor, perhaps there is even more stuff I was unaware of? Do they pry on people's personal lives in order to decide who is more suitable to be a professor? How do they find out if someone was involved in activism anyway? What if it is other things smaller than activism? Would things like cheating on a girlfriend or even having a poor health habits keep one from being a professor?

Right now, the potential of genetics research to provide practical benefits to autistic people is entirely hypothetical.

I also don't see how you can say definitively that "Autism Speaks doesn't want to develop a prenatal test." Really? You personally know the intentions of every single person involved with Autism Speaks?

Quadratura, my sympathies. It sounds like the college students running the chapter are clueless. One major problem with most "autism awareness" campaigns is that they don't take into account the fact that autistic people might actually be reading them. It's outrageous. You've also identified a major issue with "autism awareness" campaigns in that the primary aim is often to scare-monger, or even to simply "show people that autism exists." Yeah, autism exists. So what? What next? It's so shallow, IMO. Here is a link to a webinar I gave on the problems with autism "awareness" and what the alternatives are, for anyone interested:
http://www.scribd.com/doc/52871744/Auti ... ril-7-2011

I'm not quite sure what you can or should do. You said you know other students on the spectrum. Maybe you could form your own group devoted to promoting a better form of autism awareness on campus? Such a group could also serve as a place for spectrum students to just have fun and socialize together. You might also recruit non-autistic students sympathetic to your perspective, if you know of any.

There are a lot of resources explaining the self-advocate perspective and why Autism Speaks is not an organization that should be supported. I don't know if any of the people involved in this chapter would be open to hearing this perspective, though. From your description it seems like there are a lot of students who are do-gooders who want to "do something," but who aren't particularly thoughtful or informed about it. That sucks.

Well, as I said, no matter what you do - or don't do - I have no problem with you and your decision. I'm trying to make that very, very clear. My problem is with the eugenicists themselves, those who present us with these dilemmas.

As far as the other argument, that "some of what they do also does good" - you could make that same argument for the Nazis. And, speaking for myself, I can only think that stopping everything the Nazis were doing, cold, then finding someone else to - in a completely different and much better fashion - do whatever good they were doing alongside all that evil was and remains the only reasonable answer. If you disagree, well, again, I'm certainly not trying to pick a fight with you. But that is my opinion, for what it's worth.

In a future meeting, can you ask which groups are represented there? Look upbeat. Most of these people will jump at the chance to give props to their group. Take notes.

Then send a letter to each of the groups represented and urge them to look more closely into where the money goes and what the group really stands for. Let them know there are other, better, more autist-friendly organizations out there that deserve their support far more than Autism Speaks does. Provide links so they don't have to do much work.